3018 replies to this topic

[sdro123]

It's weird, certain days im exhausted and others i am energized. I worked a 10 hour day again and i figured i'd be done, but somehow i am sleepy but my body is feeling good.  I've been eating a wrap with salad and bean sprouts each night with some veggies and grass fed meat in it.  I notice a difference in my energy just from eating fresh and healthy...which i usually do anyways, but not consistently enough. REally focused on my diet and it makes the brain stuff subside.  Makes my mood better as well.  Really all i DO know is exercise, eating well, getting adequate rest, taking some joint supplements, and MMS are the only things that work for me..iodine like i said helps with morning stiffness and vision, but that's all i have noticed.  I heard from someone that diet is huge for adrenal fatigue which I believe a lot of us have without even knowing.  I think a nutritionist is my next step once i don't have $2,000/month student loan payments. thanks america! YEAH!

[sdro123]

This song makes me happy.  Love her smoky voice.  If you don't listen to Beach House, nows a good time to start.  Yes, there videos are out there, but so much less pathetic than most videos i see out there.  The meaning is there if you look hard enough!

 

http://www.youtube.c...h?v=4ZxrIbTMJr4

[gladiatoro]

http://www.naturalne..._sclerosis.html Big Pharma is at it again stealing natures cures from ancient chinese medicine , interesting read. Click on the link.

 

 

[camaroz28]

http://www.naturalne..._sclerosis.html Big Pharma is at it again stealing natures cures from ancient chinese medicine , interesting read. Click on the link.

Yes I agree, they are sneaky. I guess you can't blame them, given the success of past winners like Propecia. Saw Palmetto was already quite nasty, so why not improve on the idea, and remarket for greed? I'm agreeing with you; not that you can see my post.

Edited by camaroz28, 06 March 2013 - 10:05 PM.

[Livetoregret]

Live to regret when you are describing your symptoms it sound exactly as what has happened to me. Every single symptom you are describing is what I am struggling with every day. I used to do little bit of modelling too. I lost 70% of my hair and it falls out every day, it also changed its texture and colour. My skin is fucked. The worst thing is I still have acne which is bizarre as my skin is so dry where is it coming from. It scars so easily and my whole back is covered in spots top to bottom. I never even had back acne before accutane.

Joseph I don't think dry skin and hair loss is caused by an autoimmune response. Accutane affects hair follicles and sebaceous glands. I closes it up, that's it. I don't want to be horrible but i don't think that's reversible. That thought is killing me every day.

I think your right and thats what really fucking scares me....

[oli girl]

Live to regret when you are describing your symptoms it sound exactly as what has happened to me. Every single symptom you are describing is what I am struggling with every day. I used to do little bit of modelling too. I lost 70% of my hair and it falls out every day, it also changed its texture and colour. My skin is fucked. The worst thing is I still have acne which is bizarre as my skin is so dry where is it coming from. It scars so easily and my whole back is covered in spots top to bottom. I never even had back acne before accutane.

Joseph I don't think dry skin and hair loss is caused by an autoimmune response. Accutane affects hair follicles and sebaceous glands. I closes it up, that's it. I don't want to be horrible but i don't think that's reversible. That thought is killing me every day.

I think your right and thats what really fucking scares me....

Many Accutane suffers have been found to have autoimmune conditions in which many autoimmune conditons symptoms are dry skin & hair loss....Such as Autoimmune thyroid, diabetes, celiac, etc....That's not saying that some Accutane suffers just have permanant dry skin or hair loss b/c that has happened also.

[Livetoregret]

 

Live to regret when you are describing your symptoms it sound exactly as what has happened to me. Every single symptom you are describing is what I am struggling with every day. I used to do little bit of modelling too. I lost 70% of my hair and it falls out every day, it also changed its texture and colour. My skin is fucked. The worst thing is I still have acne which is bizarre as my skin is so dry where is it coming from. It scars so easily and my whole back is covered in spots top to bottom. I never even had back acne before accutane.

Joseph I don't think dry skin and hair loss is caused by an autoimmune response. Accutane affects hair follicles and sebaceous glands. I closes it up, that's it. I don't want to be horrible but i don't think that's reversible. That thought is killing me every day.

I think your right and thats what really fucking scares me....

Many Accutane suffers have been found to have autoimmune conditions in which many autoimmune conditons symptoms are dry skin & hair loss....Such as Autoimmune thyroid, diabetes, celiac, etc....That's not saying that some Accutane suffers just have permanant dry skin or hair loss b/c that has happened also.

Jen we know about the auto immune effect, what about somthing harder to detect like pituitary dysfunction, that's what Im exploring now. 

[Livetoregret]

Ps Guys in recent months Ive developed a really bad case of keratosis pillaris ALL over my body - neck,chest,arms,legs,butt..just when I though it couldnt get any worse ...

[sbowlchica]

I'm trying the low oxalate diet. Two days on it, I felt great-- no more hair loss! skin not dry! It was wonderful!

 

... and now I'm in the detox phase and feel like absolute shit.

 

I feel tired all the time but I can't sleep. I feel anxious. I have brain fog. I'm back to being hypersensitive and irrational. Skin and hair are awful. It's like everything that happened to me on Accutane is coming back in full force.

 

Oxalates are chelators for important nutrients; they also impair the body's ability to rejuvenate and detoxify. They cause inflammation and can negatively impact your thyroid and kidneys (both problems I have.) Magnesium and probiotics are supposed to help the body process oxalates, so I'm taking both and make a point to eat plain Greek yogurt mixed with a banana every morning.

 

I tried my first water fast yesterday and was surprised by how great I felt. It was like I was living in a dream-- I was kind of foggy but absolutely relaxed and at peace... and then I couldn't sleep on an empty stomach and ate something right at the 24 hour mark. Even after that, still couldn't sleep.

 

The diet is tolerable-- it's basically a step up from the kind of diet most of you guys are on. Basically no grains except rice, a limited supply of vegetables and fruits, no legumes, but any meat and dairy is fine. I'll keep you guys updated on how it goes and let you know if it helps me any.

 

More information here: http://lowoxalate.info/index.html

[oli girl]

 

 

Live to regret when you are describing your symptoms it sound exactly as what has happened to me. Every single symptom you are describing is what I am struggling with every day. I used to do little bit of modelling too. I lost 70% of my hair and it falls out every day, it also changed its texture and colour. My skin is fucked. The worst thing is I still have acne which is bizarre as my skin is so dry where is it coming from. It scars so easily and my whole back is covered in spots top to bottom. I never even had back acne before accutane.

Joseph I don't think dry skin and hair loss is caused by an autoimmune response. Accutane affects hair follicles and sebaceous glands. I closes it up, that's it. I don't want to be horrible but i don't think that's reversible. That thought is killing me every day.

I think your right and thats what really fucking scares me....

Many Accutane suffers have been found to have autoimmune conditions in which many autoimmune conditons symptoms are dry skin & hair loss....Such as Autoimmune thyroid, diabetes, celiac, etc....That's not saying that some Accutane suffers just have permanant dry skin or hair loss b/c that has happened also.

Jen we know about the auto immune effect, what about somthing harder to detect like pituitary dysfunction, that's what Im exploring now. 

Well thyroid is one that is part of pituitary and hypothalumus. There is hypopituitarism, which could included failure of the pituitary. Usually either, thyroid disruption, tumor, adenoma, Diabetes Insipidus (diffrent from regular diabetes)  It can effect growth hormone, female hormones, acth etc... Usually lab work and a scan of the pituitary gland if it is not thyroid related. I forgot did what were your iron levels high or low????

 

I really believe with you have a high RA factor and some thyroid off that this is your main problem, the thing is you have stupid doctors there! Look up RA and you will see that it causes KP and other skin disorders not just pain. If I could I'd fly 24hrs there and bring you back to the U.S. for treatment.

[Livetoregret]

 

 

 

Live to regret when you are describing your symptoms it sound exactly as what has happened to me. Every single symptom you are describing is what I am struggling with every day. I used to do little bit of modelling too. I lost 70% of my hair and it falls out every day, it also changed its texture and colour. My skin is fucked. The worst thing is I still have acne which is bizarre as my skin is so dry where is it coming from. It scars so easily and my whole back is covered in spots top to bottom. I never even had back acne before accutane.

Joseph I don't think dry skin and hair loss is caused by an autoimmune response. Accutane affects hair follicles and sebaceous glands. I closes it up, that's it. I don't want to be horrible but i don't think that's reversible. That thought is killing me every day.

I think your right and thats what really fucking scares me....

Many Accutane suffers have been found to have autoimmune conditions in which many autoimmune conditons symptoms are dry skin & hair loss....Such as Autoimmune thyroid, diabetes, celiac, etc....That's not saying that some Accutane suffers just have permanant dry skin or hair loss b/c that has happened also.

Jen we know about the auto immune effect, what about somthing harder to detect like pituitary dysfunction, that's what Im exploring now. 

Well thyroid is one that is part of pituitary and hypothalumus. There is hypopituitarism, which could included failure of the pituitary. Usually either, thyroid disruption, tumor, adenoma, Diabetes Insipidus (diffrent from regular diabetes)  It can effect growth hormone, female hormones, acth etc... Usually lab work and a scan of the pituitary gland if it is not thyroid related. I forgot did what were your iron levels high or low????

 

I really believe with you have a high RA factor and some thyroid off that this is your main problem, the thing is you have stupid doctors there! Look up RA and you will see that it causes KP and other skin disorders not just pain. If I could I'd fly 24hrs there and bring you back to the U.S. for treatment.

Yes I now have a doctor that looking into pituitary function as well as hormonal imbalance/thyroid (again)/RA/ etc etc - never ending merry go round of nothingness..being sent for bone scan and an MRI.

[Milano]

I'm trying the low oxalate diet. Two days on it, I felt great-- no more hair loss! skin not dry! It was wonderful!

 

... and now I'm in the detox phase and feel like absolute shit.

 

I feel tired all the time but I can't sleep. I feel anxious. I have brain fog. I'm back to being hypersensitive and irrational. Skin and hair are awful. It's like everything that happened to me on Accutane is coming back in full force.

 

Oxalates are chelators for important nutrients; they also impair the body's ability to rejuvenate and detoxify. They cause inflammation and can negatively impact your thyroid and kidneys (both problems I have.) Magnesium and probiotics are supposed to help the body process oxalates, so I'm taking both and make a point to eat plain Greek yogurt mixed with a banana every morning.

 

I tried my first water fast yesterday and was surprised by how great I felt. It was like I was living in a dream-- I was kind of foggy but absolutely relaxed and at peace... and then I couldn't sleep on an empty stomach and ate something right at the 24 hour mark. Even after that, still couldn't sleep.

 

The diet is tolerable-- it's basically a step up from the kind of diet most of you guys are on. Basically no grains except rice, a limited supply of vegetables and fruits, no legumes, but any meat and dairy is fine. I'll keep you guys updated on how it goes and let you know if it helps me any.

 

More information here: http://lowoxalate.info/index.html

 

I've looked into the Oxalate connection also. There is definitely a chance of good things coming from such a diet.

 

Oxalates are a the problem for those with a damaged gut, which we all well aware is a major Accutane side effect. There is also an inverse relationship between Oxalates and Biotin and we also already know that Accutane negatively affects Biotin activity.

 

I'm half-assed trying to implement the diet as well. Its too bad I ate a ton of spinach and almonds daily after Accutane, might have made my situation worse.

 

I appear to incredibly sensitive to Biotin. Tiny amounts, I'm talking 150mcg (I've heard some people on this diet take up to 50,000mcg) every couple of days seems to give me dry skin and bad acne/folliculitis, but also helps with hair shedding and grows back the hair on the side of my head. This happens every time I try it. I once got up to 600mcg and woke up with heart palipitations and incredible pressure behind my eyes. No idea what is happening here, only guess is some sort of die off, becuase I suspect I have pretty bad fungal issues. If I could get up to the higher amount, I think my hair would definitely improve.

 

At the moment I'm taking calcium before meals (eggshell) and magnesium citrate at the end of the day. Gelatin/broth/slippery elm/ kefir water and zinc to try and heal my gut. B6 is also worth looking into. Going incredibly slowly with Biotin seems to be the only option for me.

 

Look forward to updates from you about this diet.

Edited by Milano, 12 March 2013 - 03:52 PM.

[sdro123]

That's it, I'm going gluten-free.  I tried it for a week a while back and gave up, but I felt great on it.  I really think all of my problems are from diet. End of story. I will report back after a few weeks on how the gluten free is going.  I think I overestimated how difficult it is, but with the right supplies I can do it easily...going to stop making excuses.  Several individuals have tried gluten-free after accutane and have seen amazing results. I hope i cant fit that category.

also important that even if you don't have celiac, you can have gluten intolerance,personally I feel like shit after eating wheat products.

[oli girl]

That's it, I'm going gluten-free.  I tried it for a week a while back and gave up, but I felt great on it.  I really think all of my problems are from diet. End of story. I will report back after a few weeks on how the gluten free is going.  I think I overestimated how difficult it is, but with the right supplies I can do it easily...going to stop making excuses.  Several individuals have tried gluten-free after accutane and have seen amazing results. I hope i cant fit that category.

also important that even if you don't have celiac, you can have gluten intolerance,personally I feel like shit after eating wheat products.

Just becareful with the U.S. Gluten free Craze some of it has more sugar, fat and perservatives. I try to eat a paelo diet not a strict one, which is pretty much gluten free. Since I am a lovely Accutane type 1 diabetic I make a lot of gluten free meals homemade and if it calls for sugar I use stevia

 

I agree though that I feel sooo much better when I eat very well & no wheat!

I'm trying the low oxalate diet. Two days on it, I felt great-- no more hair loss! skin not dry! It was wonderful!

 

... and now I'm in the detox phase and feel like absolute shit.

 

I feel tired all the time but I can't sleep. I feel anxious. I have brain fog. I'm back to being hypersensitive and irrational. Skin and hair are awful. It's like everything that happened to me on Accutane is coming back in full force.

 

Oxalates are chelators for important nutrients; they also impair the body's ability to rejuvenate and detoxify. They cause inflammation and can negatively impact your thyroid and kidneys (both problems I have.) Magnesium and probiotics are supposed to help the body process oxalates, so I'm taking both and make a point to eat plain Greek yogurt mixed with a banana every morning.

 

I tried my first water fast yesterday and was surprised by how great I felt. It was like I was living in a dream-- I was kind of foggy but absolutely relaxed and at peace... and then I couldn't sleep on an empty stomach and ate something right at the 24 hour mark. Even after that, still couldn't sleep.

 

The diet is tolerable-- it's basically a step up from the kind of diet most of you guys are on. Basically no grains except rice, a limited supply of vegetables and fruits, no legumes, but any meat and dairy is fine. I'll keep you guys updated on how it goes and let you know if it helps me any.

 

More information here: http://lowoxalate.info/index.html

 

I've looked into the Oxalate connection also. There is definitely a chance of good things coming from such a diet.

 

Oxalates are a the problem for those with a damaged gut, which we all well aware is a major Accutane side effect. There is also an inverse relationship between Oxalates and Biotin and we also already know that Accutane negatively affects Biotin activity.

 

I'm half-assed trying to implement the diet as well. Its too bad I ate a ton of spinach and almonds daily after Accutane, might have made my situation worse.

 

I appear to incredibly sensitive to Biotin. Tiny amounts, I'm talking 150mcg (I've heard some people on this diet take up to 50,000mcg) every couple of days seems to give me dry skin and bad acne/folliculitis, but also helps with hair shedding and grows back the hair on the side of my head. This happens every time I try it. I once got up to 600mcg and woke up with heart palipitations and incredible pressure behind my eyes. No idea what is happening here, only guess is some sort of die off, becuase I suspect I have pretty bad fungal issues. If I could get up to the higher amount, I think my hair would definitely improve.

 

At the moment I'm taking calcium before meals (eggshell) and magnesium citrate at the end of the day. Gelatin/broth/slippery elm/ kefir water and zinc to try and heal my gut. B6 is also worth looking into. Going incredibly slowly with Biotin seems to be the only option for me.

 

Look forward to updates from you about this diet.

Yes Biotin can be effected by accutane, there is even a few studies. I had mine checked recenlty 4yrs after accutane and I wasn't abnormal but on the cusp of low! It's a enzyme and a important one at that. Also, it can cause acne in some and not sure what brand your taking for it to cause palipitations etc... B6 & B1 I take both of thoose also.

Edited by oli girl, 12 March 2013 - 09:22 PM.

[sbowlchica]

@sdro123: I'd suggest going one step further than gluten-free. I didn't have much improvement on gluten-free, but on this diet, I'm already seeing promising signs.

 

@Milano: I take a prenatal vitamin with biotin in it. Biotin alone broke me out in horrible cystic acne-- if you take one B vitamin alone the ratio of B vitamins will be screwed up, and boom! acne! 

Today marks one week on the low-oxalate diet! I'm cutting out all foods marked "Very High" or "High" according to this website: http://lowoxalate.info/recipes.html

I've definitely been experiencing some detox symptoms: insomnia, brain fog, lack of energy, weakness, dehydration, chills, temperature sensitivity, super sensitive burning skin and eyes, anxiety, feeling "blah", emotional sensitivity... Usually, I can drink a lot of water and my head feels better-- not anymore. Also, on the emotional front, I've been more irritable and brash.

The weirdest symptom so far is my teeth and gums hurting... a couple days ago I could barely chew my food! Apparently that means I'm detoxing too fast and could cause harm, so I ate some hummus with pretzels and some chocolate covered almonds (just a few!) and my teeth don't hurt as much anymore.

However, some things have gotten better. Somehow, my skin and hair are softer and less dry... dandruff is going away. I'm losing a bit less hair than I usually do. No change to my IBS/poor digestion, but I don't have to go to the bathroom as frequently, which is definitely a plus.

Today has been unusually good. I woke up feeling-- not that bad, actually, tired and foggy... When I combed my hair, I only lost about 15 or so hairs, which is a huge improvement. I felt kind of dreamlike, at peace; even when I got up to give my French presentation I felt like I was laying on a couch talking to one of my good friends. (This never happens.) Yesterday, I lost a ton of hair, and when I got up and narrated a 30 second cheese commercial, I was a nervous wreck. I wonder if the diet is helping already or I've just had a couple of freaky good days where everything goes right amidst all the detox craziness.

The people I've heard from online say it could take a month or two to start seeing real effects, and the detox symptoms come and go in waves, sometimes even years in! I can definitely put up with this; it isn't much worse than what I normally go through-- the only big change is my unusual drop in mood. People online describe sandy stool with specks in it and cloudy urine to mean you're getting rid of oxalates. When I ate spinach every day I had cloudy urine all the time, but recently, I haven't had any of that.

For your information: I take a prenatal vitamin, magnesium oxide, evening primrose oil, MSM, and acidophilus.

Warning if you're going to try this diet: different food lists online have conflicting information! Some food I have found conflicting information for are grape juice, oranges, kale, broccoli, peaches... I've decided to trust the website above since it is run by a group I've joined that send me daily helpful emails... they really know their stuff! (Even so, to be safe, I try to limit these foods, anyway.) Here's the link to the group: http://health.groups...g_Low_Oxalates/
 

Edited by sbowlchica, 13 March 2013 - 01:29 PM.

[sdro123]

Does anyone have hip pain or knee pain that has gotten better??? i'm going to PT now for hip bursitis, and I also had inflammation in my knees but no visible damage.  Has anyone got any help with similar problems? and no I am not fishing for doomsdayers/debbie downers to tell me i'm fucked...i want some honest feedback though.

[oli girl]

FYI everyone....I sure you have noticed they combined all prescrption acne treatments into one fourm. Our pinned Accutane negative and postive threads gone. Accutane pinned thread on studies gone. If someone posts a topic looking for help it may be missed and we have to keep up with this thread otherwise it will get lost in the shuffle! Not liking this

 

Sdro123- I don't know if I have a good answer there's a lot of things, but have tried taking a bath in epsom salt? Might help with the pain & inflamation.

Edited by oli girl, 13 March 2013 - 08:59 PM.

[gladiatoro]

FYI everyone....I sure you have noticed they combined all prescrption acne treatments into one fourm. Our pinned Accutane negative and postive threads gone. Accutane pinned thread on studies gone. If someone posts a topic looking for help it may be missed and we have to keep up with this thread otherwise it will get lost in the shuffle! Not liking this

 

Sdro123- I don't know if I have a good answer there's a lot of things, but have tried taking a bath in epsom salt? Might help with the pain & inflamation.

Yeah I noticed that the negative threads are  GONE ,  hmmm.... wonder why could we be inflicting too much damage$$$ on the maker of this poison??? . Too bad suckers  the truth will be told.

[Livetoregret]

Has anyone emailed mods about this???!

[gladiatoro]

Has anyone emailed mods about this???!

I noticed you started a new " negative accutane experience" good job , let's hope it remains for a while before they delete it.